Newly Diagnosed in NYC

[JanW]

Hello all --

I've been reading along here with interest since last week when I visited with a rheumotolgist at the Hospital For Special Surgery in NYC last week because of a high RF, ESR and CRP reading on bloodwork my podiatrist had order because of a stubborn ankle problem. As part of my paperwork, I also took along results from a CT scan of my sinuses and throat that I had done back in June because of recurrent sinus headaches. The results suggested that doctors examine for possible WG. Because I have asthma (more on this later), the ENT kicked me back to my pulmo who ordered a chest CT which was unremarkable and told me that I could get a second opinion (which I declined to do because I was feeling fine by that time). She didn't think that I had WG.

Fast forward to now and my doc at HSS has called me to say that I've just been diagnosed, limited WG. (there isn't enough tissue for bioposy, which I know is the gold standard). I go in on Wednesday to discuss medication. I feel lucky because I have already seen my new ENT, Dr. Lebovics (St. Luke's) who is prominently featured as a top wegs specialist on the Vasculitis Foundation site, and he will do my surgery in the next few months (I have a subglottic stenosis and also a saddle nose, which I may or may not correct). Ironically, I haven't seen my pulmo since my nose saddled (August), and my allergist, who examined me in great detail a few months ago, didn't even notice. Naturally, the rhemo and ENT WG noticed immediately, although the ENT made me feel better by saying that my nose wouldn't likely get any worse and if it doesn't affect my breathing (it doesn't) I should only correct it if it bothers me. Ironically, my rheumo, Dr. Yee, says that the WG has nothing to do with the ankle (which is indeed getting better since the cast came off)!

I'm glad to have found this community, and feel lucky that at least I have generally felt pretty good, except for my ankle which has really limited my mobility. I have a little transient joint pain, especially in my shoulders, next and occasionally pecs, which I suppose could be WG or the fact that I've been in a moon boot for my ankle for the last six weeks, but nothing Motrin 600 mg at bedtime doesn't fix.

Oh, neither doc thinks I ever had asthma (for which I have been treated since 2005). Should be a fun visit with my pulmo tomorrow.

Any words of wisdom on the first medication visit with the doc? This guy is pretty conservative I think, and definitely a wegs expert. He did indicate he treats limited less agressively than non-limited. Any chance you think I could get away with only steroids (I have read that this is generally not enough to achieve remission but I am also wondering if I have ever gone into spontaneous remission with this if I have had it since 2005, and really very limited symptoms all that time).

[GARYfromBOSTON]

Jan, you found the right community! I'll let the veterans advise on med related questions you should ask the doc. Just wanted to say hi and welcome!

[JanW]

Thanks! I like communicating via various forums anyway and have been really impressed by how well spoken everyone is here (sue me, I'm a journalist). I'm looking forward to being part of the community and sharing what I will learn. Luckily being here in NYC I have access to people who have seen lots (relatively speaking) of WG before, and Dr. Lebovics did original research on the disease at the NIH (which Fauci who also worked on AIDS), which is why Dr. Yee referred him to me. He's done a few hundred subglottic stenosis operations and hasn't had to do a trach in over 10 years, so I am very hopeful because of that. Other than that, they are great people and I called Dr. L. on a Thursday and was able to get in the next day. I called Yee on a Monday and was in the following Wednesday. So these folks have been very accessible. Just putting it out there in case anyone else in the area is reading along, the way I was a week ago.

[elephant]

Welcome Jan, I had a lung test done in June 2009 and the pulmy was wondering if I had asthma? My, sneaking suspicion is that the Wegeners damaged my lungs ( very sneaky). Back 32 years ago ( I was 12) I was starting with symptoms of WG. Long story, but in 2008 July I was diagnosed with limited WG. I have a kidney transplant ( 1989), back in July 2008 I was on cyclosporine it is a anti-rejection medicine. So the local Rheumatologist just put me on 60 of prednisone and kept me on the cyclosporine. But that did not work. The Rheumatologist was very careful because of my kidney transplant. Anyways they will probably start you off with Prednisone 60 mg and maybe cyctoxan. You might be lucky and just have prednisone with cellcept, which I am on. It seems to be working. The verdict is not out yet on that one. If you have any questions, I will be happy to answer them.

[Jack]

Hi Jan and welcome to the forum.

Sounds like your Wegener's has been caught in good time and before you have too many of the more serious problems. However, I am not a great fan of the term "limited" Wegener's because it has a nasty habit of becoming very unlimited very quickly!

With your fairly restricted symptoms, I'm not sure what your medication will be. The trend these days is to treat quite conservatively to try to avoid the problems brought on by drug side effects (my own main problem now that I am 25 years down the Wegener's road). You may also find that he wants biopsies to confirm diagnosis as some of the drugs that may be involved in your treatment are not trivial.

Best of luck with your visit. Please keep us in touch with your progress and in the meantime feel free to ask anything you wish or raise any new subject whether it is concerning life and death or food and pets!

[JanW]

Elephant: You had a kidney transplant unrelated to your WG? (my understanding was that limited WG didn't affect kidneys -- that's what Yee said).

[JanW]

Jack: thanks for the welcome. Yee already said, and Lebovics already confirmed, that no biopsy will be done. The tissue on the subglottic is all quite mature, and Lebovic said that there is not inflammation. There is inflammation in the nose, but not enough to get a biopsy. My understanding on the limited part is that recent research has shown that these are two distinct disease patterns, but I could be wrong about that. Yee was very confident that limited meant more conservative treatment and potentially better prognosis.

I think that they are just happy to have me because I'm black, and there certainly aren't many black weggies. It was between this and sarc, because of my race and wegs won out (you guys have a much better forum than anything I saw for sarcs anyway). ;-).

[Jack]

As in my last post, I'm not sure that there is such a thing as Limited Wegener's. It comes with such a wide variety of symptoms that it is just a matter of luck whether it affects major organs or not. In my own case, I had kidney failure and a transplant in the early days, but no lung involvement until very much later.

[elephant]

Hi Jan, well they figured ( Rhuemy) that I had Wegeners disease the whole time ( over 30 years). It attacked my joints and kidney's and other stuff in the beginning, but they diagnosed me way back ( 1980's) then with an autoimmune disease but didn't know which one. So like Jack stated, we actually have the same pattern... kidney failure and then later lung damage. Not only lung damage, my left maxillary is severely damaged and never will be the same. I need a maxillary transplant. Just Kidding. Other stuff that is damaged.
So I don't believe in the limited thing either. It is a sneaky weird disease, and some people do well and never have a flare for 30 years or people like me continue to fight this disease like a boxer. So that's why I am glad I joined, because I learned so much from these wonderful people than the doctors ( Even the big wig WG specialist). So, I am glad you are here too.

[pberggren1]

Hi Jan:

I have heard of a few cases of so called limited WG in which they went into remission with no or very little meds. But as Jack said I don't like the term limited WG either. It is such a strange disease and can affect everyone diffently and with varying degrees of severity.